On raising a son on the autism spectrum, progressive politics, pop culture, and coffee addiction.

Saturday, April 02, 2016

Awareness, acceptance, advocacy, action

It's April 2, the day that the United Nations has designated World Autism Awareness Day. My social media feeds are buzzing with blue lights and puzzle pieces. I've chosen to avoid these particular icons, because I believe they have more to do with brand awareness than with autism awareness, and the corporate-aligned brand they represent is one that runs counter to many of the things I believe strongly.I'm all in with the UN, however. Their theme for World Autism Awareness Day 2016 is "Autism and the 2030 Agenda: Inclusion and Neurodiversity." Their website reads:

Autism and other forms of disability are part of the human experience that contributes to human diversity. As such, the United Nations has emphasized the need to mainstream disability in the Organization’s development agenda. Mainstreaming disability requires an integral approach in the design, implementation, monitoring and evaluation of policies and programmes in all political, economic and societal spheres, so that inequality is not perpetuated.

It also features a quote from UN Secretary-General Ban Ki-Moon: "On this World Autism Awareness Day, I call for advancing the rights of individuals with autism and ensuring their full participation and inclusion as valued members of our diverse human family who can contribute to a future of dignity and opportunity for all."Now, that's the kind of autism awareness I can get behind. In fact, it is much more in keeping with the philosophy of the Autistic Self Advocacy Network's Autism Acceptance Month movement, whose website has a "focus on sharing positive, respectful, and accurate information about autism and autistic people," than with that of Autism Speaks, which has both a much larger platform and an Awareness Day website full of pathologizing words like "diagnosis," "symptoms," "treatment," and "prevalence."Around here, we are on the Acceptance bandwagon, and we try to implement ASAN's Autism Acceptance Month slogan, "Acceptance is an action."Acceptance starts with awareness, of course. Just this week, we had an experience that quite literally brought the idea home, and highlighted the importance of all of it: awareness, acceptance, advocacy, and action.Monday afternoon I was at work, and my phone rang. It was Bud. He had just gotten home from school and he was sad. Not dysregulated. Sad. He was thoughtful and articulate and he was calling because there was something that he wanted to talk about."I didn't have a very good day at school," he said.I asked what happened, and he explained that this week is Winter Carnival Week. "But I didn't KNOW it was Winter Carnival Week," he said, a hint of anxiety creeping into his voice. I understood what was unspoken in his words - "fun" days at school are rarely fun for Bud, especially if he doesn't see them coming.He said that he got in trouble for running away from the talent show assembly in the auditorium, and said that his teacher was "very cross" with him. Running away - bolting from his classroom and, sometimes, from the school itself when his "fight or flight" defenses are triggered - has been an ongoing safety concern."But I didn't try to run away," he explained. "I tried to get back to Gateway." "Gateway" is Bud's home base - his safe haven - his shelter from the storm at the high school.I asked what bothered him at the talent show, and he explained that it was "all the noises." I asked what happened next and he said he burst into tears.My heart broke. From his version of the story, the scenario was clear to me. The auditorium, on this first day of Winter Carnival, was a sensory nightmare for Bud. His brain sent the "danger" signal to his body. He was overwhelmed. He had to get out.I asked who was with him in the auditorium and he named one of the paraeducators. I asked if he told her that all the noises were bothering him. He answered, "Yes, but she said, 'you're going to love it.' She didn't answer me."My heart broke again. He did what we've been telling him to do. He advocated for himself. He told someone what he needed. And it didn't work.Bud knew - as I knew - that staying in the noisy auditorium was not an option for him. Had he stayed, the issues would have escalated. He needed to leave, so he left and he headed to the place he's been told is his safe space. On the way, he encountered another teacher who did not have the context for the current situation, but was aware of the ongoing issues involving "running away."Bud told me that he got in trouble, and he worried about what his teacher thought. "I don't think she'll be very happy to see me tomorrow," he said, scripting, but nailing his emotions in the words. "Maybe if I apologize," he said.I told him that if he said or did anything rude or mean, then an apology was important. But, I said, if he was doing his best, and doing what he had been told to do, then it was more important to talk about that - to find out what he could have done differently to not "get in trouble." I asked him if he'd like me to email his teacher to explain what he told me and ask her if she would talk to him about it the next day so that they could come up with a plan.The relief in his voice on the other end of the phone was palpable. "That would be perfect," he said.I sat down and wrote to Bud's teacher, recounting Bud's version of the day in much the same way that I've recounted it here. I asked if there was an alternate version of what had gone on, and I explained that, from my perspective, Bud was sincerely confused by what had happened. He genuinely wanted to talk about the fact that he'd wanted to do the right thing, but that it ended up being the wrong thing, and in the end it had ruined his day.I told her that, to me, the issues at the core of this situation were sensory overload, recognizing his own reactions to outside stimulus, and self-advocating appropriately for what he needs. "I think," I wrote, "that he truly wants to know what the right response would have been, given that staying at the talent show was simply not an option for him."Bud's teacher replied to me the next day, after she'd spoken to Bud. The incident, she said, was "all staff error." She apologized, and acknowledged that though we all try to do our best, we sometimes miss the mark. In this case, Bud was not offered the support he needed, when he'd clearly expressed that need. Her conversation to process the incident with Bud had been a good one, she said, and they'd developed a plan together.The rest of Winter Carnival week went off without a hitch. Bud knew what to expect and he made his choices accordingly. On America day, he decided to wear orange instead of red, white, and blue, "because I like orange." (And what, I ask you, is a better way to celebrate the American spirit than to exercise our individual rights?) He was back in a crowded environment on Friday for obstacle course relay races, which he thoroughly enjoyed. (He was invited to participate, but declined. He preferred the role of spectator.)So, there it was, all in one week: awareness, acceptance, advocacy, action.It started with the awareness that because he is autistic, highly stimulating environments filled with multi-sensory input - especially those he does not anticipate - can be overwhelming to Bud.That awareness was followed by acceptance - the understanding that this sensory reaction is not wrong, not bad, not something that must be corrected. It is simply something that is a part of Bud - something that needs support and accommodation.And advocacy - Bud was a CHAMPION of self-advocacy this week. Right there, in the moment on Monday, in the midst of sensory integration issues, Bud advocated for himself. When his needs went unmet, he assessed his options, and made a choice. When it didn't work out the way he'd anticipated, he didn't simply accept that he had done something wrong. He furthered the conversation. He explained his rationale. He asked for clarification. He articulated his needs - and it worked.And then the action. That's the key, right? Acceptance is an action. Bud took action. I took action. The staff at school took action. We all learned something, and most importantly, Bud was empowered and his perspective was respected and reinforced. We listened to him, and we worked with him, and he got to experience the rest of Winter Carnival independently and in a self-directed way, with the supports he needed to make it happen.
And one other piece of action. Before I started writing this post, I asked Bud about it - as I do now every time I want to write about him. I told him that I'd like to tell this story on my blog. I told him I hoped that it would remind people to listen when autistic people tell them what they need - to listen, and then to act, and help them get those things. I told him that I wanted to check with him to make sure it was okay for me to write about it. And then I asked him what he thought.

7 comments:

Thank you for writing this. My son also does not handle loud/noisy situations well - although it doesn't stop HIM from making noise. It is difficult to constantly having to educate school staff on this.

I like the idea that Bud has a safe place at school. What an excellent idea.

That was brave of Bud to approach the teacher and express his needs. He may have inspired other children around him. The communication between you and the school was great, too. I say great because you stated his needs clearly with respect and they replied with respect. So important.

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